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Re: Motor neuron disease - ALS [Re: Brian Hill] #191884
02-29-2016 10:39 AM
02-29-2016 10:39 AM
Joined: Aug 2011
Posts: 596
MA
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Kerri Offline
"Above & Beyond" Member (500+ posts)
Kerri  Offline
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K

Joined: Aug 2011
Posts: 596
MA
Hi, Flip.
I started having severe cramping / charlie horse type spasms in my neck, under my jaw, and behind my head at the base of my skull (starting about 2 years ago). This past year and after a lot of appeals to my insurance company, I have started receiving Botox injections to these areas. The doctor does one side at a time because of the potential for undesired side effects such as problems with speech and swallowing and head drop. Fortunately one of my sides is much worse than the other so this doesn't bother me. I have to tell you that these Botox injections have been a godsend. I see a doctor who is in the palliative care department of my Comprehensive Cancer Center and he also works in the pain management clinic in the main hospital. The spasms are very common in the areas that I described and that you may be experiencing yourself. It's common for them to be a latent effect radiation treatment to the head and neck. You are not alone and there is help for these spasms which are debilitating to say the least. I hope this message helps you find the care that you need. Please feel free to send me a private message if you need more information.
Love in OCF,
Kerri


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
Re: Motor neuron disease - ALS [Re: Flip] #192046
03-19-2016 05:28 PM
03-19-2016 05:28 PM
Joined: Apr 2011
Posts: 7
FL
C
Connie Offline
Member
Connie  Offline
Member
C

Joined: Apr 2011
Posts: 7
FL
Hi Flip, I haven't been on here in awhile, but came back looking for information and noticed these posts and your comment about the severe cramping in your neck. My husband, an 11-year Stage 4A oral cancer survivor, was also having severe cramping in the neck. The right side of his neck, where lymph nodes and muscle were removed and a nerve cut, had scar tissue running down the side. The skin and tissue in the area was extremely hard and basically plastered down. This caused his head to lean towards that side, affecting his posture, and as I said, he had the severe neck cramping which happened almost every day. Due to another long-term issue that I will go into on a separate post, we decided to try out cold (low intensity) laser therapy on his jaw and neck. We started with a physical therapist through a doctor's prescription and then we were impressed enough with the results that we bought a cold laser machine of our own to use at home. This therapy really softened and loosened up his whole neck area and lower jaw area which had also become very hard. He could barely tolerate being touched on the neck before, and now he is much less sensitive. He tells me that his neck cramps have decreased by 75%, he can turn his head much further, and it is no longer affecting his posture much. This therapy is said to have many effects, one of which is to increase blood flow and improve vascularization. The downside of this is that it is a therapy that isn't widely known in the States yet, and though approved by the FDA for various things, isn't covered by insurance. U.S. chiropractors and physical therapists often have/use these machines, but we have found that MDs generally know nothing about the technology. The machines are also expensive to buy, thousands of dollars, but we have used it 5x a week for 6 months on my husband for many of his various long-term cancer-treatment issues and have had some good results. I am also a BC survivor with arm lymphedema, and the cold laser did a nice job with improving my lymphedema by quite a bit (though it didn't cure it). I also noticed that all my scar tissue from my BC surgery and radiation softened and normalized and loosened everything up quite a bit after my own cold laser treatments.


Connie
Caregiver to Jerry
SSC, BOT T2N1M0
SSC, Uvula, T1N0M0
Neck Lymph Nodes N2B
Stage 4A, age 55
Surg 2/11/2005
No chemo, 33 IMRT
HBOT, 40 dives, 10/2005
Osteoradionecrosis, Antibiotic therapy, 2012 - current
Cold Laser therapy, 7/1/15-Current
Re: Motor neuron disease - ALS [Re: Brian Hill] #192111
03-27-2016 11:57 AM
03-27-2016 11:57 AM
Joined: Mar 2003
Posts: 250
Colorado
A
Anita210 Offline
Gold Member (200+ posts)
Anita210  Offline
Gold Member (200+ posts)
A

Joined: Mar 2003
Posts: 250
Colorado
The cold laser therapy sounds interesting - glad it has given your husband some relief.
I wonder if it could do anything to help with swallowing problems due to radiation.


Husband Dx 12/02 Stage 4 Tonsil Cancer T1N2bM0; surgery, radiation, chemo 1/03 - 4/03.
Re: Motor neuron disease - ALS [Re: Brian Hill] #192116
03-27-2016 05:24 PM
03-27-2016 05:24 PM
Joined: Aug 2011
Posts: 596
MA
K
Kerri Offline
"Above & Beyond" Member (500+ posts)
Kerri  Offline
"Above & Beyond" Member (500+ posts)
K

Joined: Aug 2011
Posts: 596
MA
Hi, Connie.
It's great to hear that you've had such a wonderful result from the cold laser therapy treatment. I'm a physical therapist and I am aware of cold laser therapy however the hospital system where I used to work did not find sufficient evidence to warrant purchasing one. This was about 10 years ago though. At that time we had an inservice from one of the manufacturer's so I don't work all much about how works but I'm glad that it's work well for you I may consider it if I find that my colleague has had good experience with it and there are no contra indications to using it. There are sensors in the Carotid artery and that same area that control your heart rhythm and blood pressure. So I'd be worried about using the device right over or close to those areas. I'll ask one of my colleagues who uses it in her clinic to find out if there any contraindications for using it in such a highly vascularized areas such as the neck .

Thanks for sharing your experience!


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
Re: Motor neuron disease - ALS [Re: Brian Hill] #192146
04-01-2016 09:07 AM
04-01-2016 09:07 AM
Joined: Sep 2009
Posts: 697
Media, PA
A
AnitaFrances Offline
"Above & Beyond" Member (500+ posts)
AnitaFrances  Offline
"Above & Beyond" Member (500+ posts)
A

Joined: Sep 2009
Posts: 697
Media, PA
I haven't been on the forum for a while but I post today because of a new symptom that my husband is experiencing. Not sure if this is a precursor to a more serious issue.

Within the last 2 weeks, Clark has noticed trembling in his hands which seem to be progressing every day. We both immediately attributed this to the delayed effects of radiation. He is 8 years out from head and neck radiation. We'll be making an appointment with a neurologist at Penn to find out what's going on.

Anyone else out there having similar symptoms? I love to hear from you. Thanks all!


Anita (63)
CG to husband, Clark, 73,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14
Re: Motor neuron disease - ALS [Re: Brian Hill] #192147
04-01-2016 01:16 PM
04-01-2016 01:16 PM
Joined: Dec 2003
Posts: 2,606
Atlanta
U
Uptown Offline
Patient Advocate (old timer, 2000 posts)
Uptown  Offline
Patient Advocate (old timer, 2000 posts)
U

Joined: Dec 2003
Posts: 2,606
Atlanta
Anita, I get something like that I describe as "bouncing" vs tremble. It feels like I have a band aid around my torso and the nerves buzz too.


SCC Stage IV
BOT primary
T2N2bM0
Cisplatin/5FU x 3
40 days radiation at 4 sites
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
PLS 02/13
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/
Osteoporosis 01/2018
Heart attack 06_2018

Living life LARGE with no quit in this guy!
Re: Motor neuron disease - ALS [Re: Brian Hill] #195188
10-03-2017 06:50 PM
10-03-2017 06:50 PM
Joined: Feb 2006
Posts: 32
boston
D
davew Offline
Contributing Member (25+ posts)
davew  Offline
Contributing Member (25+ posts)
D

Joined: Feb 2006
Posts: 32
boston
Haven't been here for a while, but have many of the same issues posted above 10+ years post treatment. Dr Stubblefield (was at Sloan Kettering in NYC but moved to Orange NJ a few years ago) was a pioneer in this field, and helped me a lot. Maybe his papers will help. Lyrica also seems to help me... Here is another recent paper that can help explain things to your local Dr...

http://www.sciencedirect.com/science/article/pii/S1507136713010079


Re: Motor neuron disease - ALS [Re: Brian Hill] #195193
10-07-2017 05:14 AM
10-07-2017 05:14 AM
Joined: Jul 2012
Posts: 3,168
NYC
P
PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
Patient Advocate (old timer, 2000 posts)
P

Joined: Jul 2012
Posts: 3,168
NYC
davew,

Maybe we discussed it before, that I've been also following Dr Stubblefield's work for a few years, including papers and video's, which make sense. It's too bad he left MSKCC, and although NJ is close also, it's not a travel option at this time.

He does have a book, "Cancer Rehabilitation: Principles and Practice, 1st Edition" which is out if my price range, like $250 lol. I keep meaning to see if one of the cancer centers here have it in their library.

Glad he helped you, and thank you for the link.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Re: Motor neuron disease - ALS [Re: davew] #195288
10-23-2017 11:34 AM
10-23-2017 11:34 AM
Joined: Jul 2009
Posts: 1,388
Los Angeles
D
David2 Offline
Patient Advocate (1000+ posts)
David2  Offline
Patient Advocate (1000+ posts)
D

Joined: Jul 2009
Posts: 1,388
Los Angeles
[quote=davew]Haven't been here for a while, but have many of the same issues posted above 10+ years post treatment. Dr Stubblefield (was at Sloan Kettering in NYC but moved to Orange NJ a few years ago) was a pioneer in this field, and helped me a lot. Maybe his papers will help. Lyrica also seems to help me... Here is another recent paper that can help explain things to your local Dr...

http://www.sciencedirect.com/science/article/pii/S1507136713010079

[/quote]

David to Dave (and, long after the initial post, to Brian): thanks for this interesting link. I'm in the process of testing for this very thing, with nerve conduction stuff done last week and an MRI scheduled for Thursday. Everything I was able to understand from that article leads me to believe that it pretty much nails down my issues. I'll write more about it once the MRI results are in and I've had a chance to discuss them with my doctor.


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 9 years all clear in 6/18 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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